Tuesday, March 21, 2017

Who?

When Mom was first diagnosed with Alzheimer's and we started telling friends the most common question we received was, "Does she still know who you are?". And if we answered yes they would respond, oh great!

Well yes, she knows who we are but she also wears depends and drinks hand sanitizer and washes her hands in the toilet if you aren't looking but.....great?!

I don't mean to sound like an asshole. Anyone that takes the time to ask how we were doing is a Saint. And now that we are in the end stages I feel like that question is one I now ask myself before every visit with Mom.

The Alzheimer's Association is putting on the very first Memory Gala this weekend in Charlotte. They emailed me a few months back and asked if I could do a video interview with Michelle Boudin talking about my experience as a long distance caregiver and as a daughter of an Alzheimer's patient. This video will be aired at the Gala. I of course said yes. About a week after we had our video interview Michelle reached out to me and asked if there was any way that I was going to Asheville anytime soon and if they could film me with Mom. And I of course said yes. I literally would do anything to reach more people and get our story to a broader audience.

I just happened to be going up to Asheville for a girls weekend so the timing worked out perfectly. I stopped by to see Mom on Friday morning and she was ecstatic to see me. She smiles and cries and says I love you. She says that the most. She also tried to ask me where I live and I explained in Charlotte. She asked about 8 more times within the 45 minutes I was there.

On Sunday morning my sweet friend Anna spruced up my hair (I cannot figure out beach waves for the life of me) and my friend Adelaide poured me some champagne (for nerves...and for my hangover) and off to the facility I went.

The facility knew we were doing something special so they had parked Mom's wheelchair in the main hallway, her hair freshly washed and put her only dress that will fit on her. I wheeled her into the lobby since we have to be very careful of other resident's privacy.

Dan the cameraman is probably the nicest and easiest person on the planet to work with. I parked Mom in front of a window with good natural light and just spent time talking to her, brushing her hair, holding her hand. Conversation is difficult but I can typically figure out what she is trying to ask me. I knew she was trying to ask where my Dad was and I said "Beano came yesterday, and he will be here Monday with coffee".

Who?

Beano. nothing.

Dad. nothing

Your Man. nothing

For the past two years she has called my Dad "my man". I am "my girl" and my brother is "my boy".

Your Man Mommy, Beano, your husband. nothing.

I'm not sure if Dan got this on audio, I don't think I had been mic'd up yet. My heart broke. I pulled out my iPhone (thank you Steve Jobs) and found pictures of Mom and Dad. And she looked at me like the light had been flipped back on and said Oh YES, my man.

This happened twice more.

I left my time with my Mom that day sobbing. I called Max and just cried for five minutes. My Mom was declining rapidly. I just cried and cried. The girls back at the house had texted that they had headed down the mountain and wanted me to meet them for a few last shopping spots. I cried more. Having those girls in Asheville and eating, drinking, laughing with them was the best medicine in the world.. And then they were leaving and my goodness I didn't want them to go. I wanted to have lunch at Corner Kitchen and then go back to the house and light another fire and sit around and talk. I wanted to hold them hostage. But daylight savings robbed us of our time that day and we all had to return to our individual worlds of laundry, bills, life, kids and work.

I can't thank you girls enough for being with me that morning....and throughout this entire journey. And a huge thank you to Michelle and Dan for capturing these fleeting moments with my Mother.

6 comments:

You are amazing Katherine! I so admire you and your dad as caregivers and your unending willingness to share this incredibly difficult story that will undoubtedly help many others. The gala Saturday night will be a huge success,I am sure. Hang in there, you are doing so much good - xo, spencer

Oh, Katharine...You are such a blessing and so generous to share all of this with us in Louisiana who love you, Beano, and Barbaraso very much; and are not able to be there. Your cousins are with you always in our hearts.

Kat, you not only are so good for BB, you are so so good for Beano. As an old friend of both, I wish there were something to do, but I love and honor you for caring for two of my old friends. OK, Beano you're not old.

Hi Katharine,I am one of BB's friend from Jazzercise. I had been in Fl for the winter and not seen her since Jan . A couple Jazz friends and I visited BB this week.We were worried she would have forgotten about us. Not so. The "I love you", "you look beautiful" "thank you for coming" are still there. I can't imagine how hard this is for you. I know how hard it is for us to see the disease progressing. But, BB is in such a good place. She loves where she is at, she loves everyone there, everyone knows her and waves and talks to her as they pass her. She is so happy and generous with sharing her love to all.

As we left we agreed that WE are the ones that benefit more from the visit. She always makes US feel good after spending some time with her. So glad to know her.Laura

I can't even imagine what it is like for you. My heart just goes out to you. I know your mom is so proud of you. I still think of your mom as the wonderful, upbeat always laughing and full of energy, wonderful women I had the pleasure of spending lots of time with years ago! Please now I am always sending prayers and good thoughts to your family.

((HUGs))) From one daughter to another. I just found this blog of your journey. I have a blog here of my parents and my journey called confessions of a caregiver For seven years so far. People always ask how mom is- i say she's doing great(not) and they reply to tell her they say "hi" - LoL, ridiculous- but i say sure and put a bandaid on the wound to my heart. i dont go into how she cannot speak or understand me, why bother.. Daughters like us are special. https://confessionsof1caregiver.blogspot.com/